About this episode

Professors Jennifer Jones and Kami Gallus discuss the results of their interviews with family members who initially opposed the transition out of an institution into community living for their relative with a disability. They discuss the six factors that mere most important to family members in changing their attitudes toward their relative’s new life.

Dr. Kami Gallus is a Licensed Marriage and Family Therapist and Associate Professor of Human Development and Family Science at Oklahoma State University. Her research and clinical work is focused on exploring systemic factors of growth and resilience following stressful life event and traumas throughout the life span. Most recently, her work focuses on exploring quality of life and family resilience among individuals with intellectual and developmental disabilities. Through her professional work and personal relationships with individuals with disabilities and their families she has first-hand experience of the reciprocal benefits of inclusion.

Donald Taylor is the Membership Manager at TASH and the producer of Amplified.

Transcript

Announcer: You’re listening to TASH Amplified, a podcast that seeks to transform research and experience concerning inclusion and equity for people with disabilities into solutions people can use in their everyday lives.

Jennifer Jones: Hi, I’m Jennifer Jones and I’m an Assistant Professor in Human Development and Family Science at Oklahoma State University. Like many others in the disability field, I wear both a family member hat and a professional hat, and so over the past twenty years or so, my work in the community and now my work in academia is strongly influenced not only by leading researchers in the field but, really, by the conversations that take place around my own family’s dinner table.

Kami Gallus: And I’m Kami Gallus. I am an Associate Professor in the Department of Human Development and Family Science at Oklahoma State University. And I’m also a licensed marriage and family therapist in Oklahoma. Unlike Dr. Jones, I’m relatively new to the field of disability studies — really within the last three or four years. My passion always in research and service and outreach is focused on risk and resilience factors and how the family relationships and outcomes play out of those experiences. Recently with my work with Dr. Jones I’ve been focusing more on advancing the quality of life of Oklahomans with intellectual and developmental disabilities or their family members.

Donald Taylor: How did the two of you become involved in your current study?

Jennifer Jones: I’ll start. We are really fortunate that we’ve developed a wonderful relationship with our state DD [Developmental Disabilities] agency. And so, while I’ve worked in the field and conducted research in the field of IDD [intellectual and developmental disabilities] over the past, probably six, seven years as far as research and then worked in social services, primarily in the disability field before that, before I went back to academia, over the last three years we developed this relationship with our state DD agency and we’re really fortunate to have received a phone call from the director of DDS, Developmental Disability Services, here in Oklahoma, just about two years ago, almost exactly. And she asked us if we would conduct a phone survey with the family members of individuals who were transitioning out of the last two state run institutions. The state run institutions are known as NORCE and SORC, the North Oklahoma Resource Center [of Enid] and the South Oklahoma Resource Center, and those had been mandated to close and DDS was charged with that process. And what she wanted was for us to conduct a phone survey and the purpose of the survey was, really, to help the state determine what kinds of supports and services parents and siblings needed during that transition process for their family member. And we were absolutely amazed when we began those phone calls. And we had about six weeks to conduct, I think, it was 160 calls. And so we were moving very quickly. And what we learned very quickly was how much of a story these families had to tell and how willing they were to share that. And we had the opportunity to take the results of that initial survey back to Oklahoma’s Citizens’ Advisory Panel, and then as well to case managers and case manager supervisors at the state level. And I think what was really impressed upon Dr. Gallus and I during those very short few months that we began that process was how eager professionals were to hear family stories and to understand their experiences.

Kami Gallus: And, really, what was really most fascinating to us in this conversation that we would have with families was one of our very last questions that we ask all of our participants. And, again, this was collected in the spring of 2014 and all of our individuals, all 234 of the final residents of our institutions were finally transitioned by July of 2015. So in this period of this phone survey, we’re actually talking to families who had — some already had transitioned and other family members were still facing the ongoing process of transitioning. And so one of our very last questions we asked family members to respond to was, if you were to give advice to other family members going through the deinstitutionalization process, what would you say to these families? And we really heard from those families who had already been through it. And it kind of each processed through that. To tell these other families that it gets better. And so we just really wanted to explore that process more. We know through research that family members move from opposition to satisfaction in deinstitutionalization. And we were also hearing the same thing from these families in the initial stages of that deinstitutionalization process. But what we don’t understand is what makes them move from opposition to satisfaction and how can we help families get there and better understand what’s important to family members in that process.

Jennifer Jones: In wanting to understand that process is what led us to our current study is. We did this initial phone survey we had very preliminary these are the supports and services that they need. They have a story to tell. But we wanted to know how do we really help, help professionals understand the lived experience of families and help other family members. We have decades of research that show inclusion means better outcomes for individuals with intellectual development all disabilities. But families don’t always know that. And even if someone tells it, they don’t believe it. They don’t believe that working in the community could be safe. They hang on to that sheltered workshop. They don’t believe that a general education classroom is a safe place for their child. And so we really wanted to begin this research to understand the process of how can we help families move from — how do families move from opposition to satisfaction. What are those key factors for them?

Donald Taylor: You’ve somewhat anticipated my next question in your previous response: the state of Oklahoma is in the midst of a Medicaid Home and Community Based Services implementation and your study is somewhat connected to that. Before we get to your findings, would you tell us a little bit of the background of Oklahoma’s HCBS implementation?

Jennifer Jones: I could tell you a little bit about — we’ve had waves of HCBS, in that we had what’s known as the Hissom class action lawsuit [Homeward Bound Inc. v. Hissom Memorial Center, 963 F. 2d 1352 (10th Cir., 8 May 1992)] here in Oklahoma. And Hissom was one of the state run institutions that has been closed for 30+ years. But it was a lawsuit that closed Hissom. And so we have a number of individuals who receive HCBS services here in Oklahoma who are what we refer to as “class members” — they are part of that class action lawsuit. We also have individuals who receive HCBS services and they are on the community waiver. And then we have individuals who receive HCBS services and they are on the in-home support waiver, both for adult and for children. With our other research project that we do, collecting the National Core Indicators data, we visit all of those individuals. So we might visit family members also if they happen to live with a family member, but primary we’re visiting with the individuals who received the services.

Donald Taylor: So, tell us about the study itself.

Kami Gallus: Sure. The current study was a qualitativephenomenological study and so what we did was to develop — actually, let me back up: the current study was a two-phase study, or part of a two phased study that we did from January to May of 2015. And so the first part of our survey we mailed out a quantitative survey to 153 parents and siblings guardians of those individuals who had transitioned out of our state institution. And then as part of phase two, we developed qualitative interviews — what we kind of talked about as kind of being our kitchen table interview, where we interviewed parents and siblings who were willing to participate in a qualitative interview regarding their experience of, really across the lifespan, but for the current study what we specifically were looking at were our questions in regards to their experience of deinstitutionalization. Very much Dr. Jones and I come from a family systems perspective so a lot of our questions were focused on what their relationships — the impact of — it was on for their relationships with their individual that are related to.

So we had 19 family members. And when we say “family members” we’re referring to the parent- or sibling-guardian. Four of those individuals completed their interview with a spouse. So of those 23 family members that we set down and interviewed, 10 were mothers; we had 6 sisters, 3 fathers, 3 brothers, and then one brother-in-law that were all involved in that interview process. And they were all considered legal guardians of the individual, and lived within the same state as the individuals, so they were all residents of Oklahoma.

I think what’s most interesting is to consider this sample in context as an aging sample. In that our sample ranged in age — of family members — ranged in age from 51 to 85 years, with a mean of 65.33 years. So we’re talking about an aging population and which I think puts into perspective, kind of, the experience and the questions that we’re asking, as well as the experience of deinstitutionalization for these family members later in life.

For our relatives we’ll consider — when we say the term “relatives” we’re referring to the individuals that have transitioned from NORCE or SORC. All of those individuals that our family members were the guardians of, had transitioned to a daily living support setting over a year, to the less than three years. So it was between one to three years in that process of deinstitutionalization when we were sitting down with their family member and doing the interview. Twelve of the relatives were males and seven were females and they ranged in age from 35 to 70 years. And they had been in NORCE or SORC — again the two state-run institutions — 11 to 58 years, and total institutionalization ranged from 27 to 58 years for our relatives. So again, thinking about this as the individuals we’re talking to are an aging sample and many of their relatives had been in NORCE or SORC long term — or some sort of state-run institution.

Donald Taylor: So, in the study you identified six primary factors that were of concern to families in the transition process. Would you tell us about the six major concerns that families had?

Jennifer Jones: For those 19 interviews — there were 23 family members but 19 interviews there — during those interviews parents and siblings really expressed this wide range of perspectives and emotions. All family members reported being initially opposed to the closing of NORCE and SORC, and most of them rather adamantly opposed to the closing, and very vocal about that. However, during the short time period of one to three years that their relative had been in the community, 14 had moved from initial opposition to satisfaction, saying things like, “Boy I wish we would have done this sooner; I had no idea that she would do so well in the community.” But 5 of those 19 did remain opposed. And they had not had positive experiences with their family member being in the community.

What was most interesting, when we did the analysis, was that regardless of whether families fell in the opposition or satisfaction category, all 19 family members came — their narratives had the same six themes. We also didn’t find any patterns between, you know, was it siblings who said one thing and parents who said another; was it that if their relative was at NORCE we seem to have more of one theme than another; or that the duration of time — how long their relative had been in either NORCE or SORC or institutionalized total — there weren’t any patterns there. And so these six themes cut across all of those demographics that we thought might influence it.

So what those were, is that this is what family members shared, describing what they valued or desired the orders during their relative’s transition. So we limited, in this particular manuscript, our study to: what was it that they valued or desired during their transition. And what we heard from them was:

Respect our relative’s history.

Collaborate: make us feel like we’re part of the process.

Provide consistent care.

Provide quality care.

Include my family member in the community.

And then remember: we’re family. We’re not professionals.

So if you’d like we can go into a little more detail about each of those.

Donald Taylor: Maybe a different question will allow us to dig in to some of those factors. This articles is about as emotionally poignant as scholarly research can be, especially some of the quotes you included from family members where they were talking about their relative saying, “I want to go home”, or breaking up relationships that had been really long-standing, was a little emotional reading, in a context I didn’t expect it. Can you tell us about some of those stories?

Kami Gallus: I think that’s something that, Donald, really stood out to Dr. Jones and I when we first would read through or listen to the interviews: this idea that NORCE and SORC, our state run institutions, were home for these individuals. And that this change was hard, and not just for the individual, but a lot of times for the family member because they identified that as home for their relative, and recognize that their relative had developed a history there, and many, many good relationships.

Interestingly enough, and something that may not have been able to fit into our article, you know, and we would talk to many of our state administrators, whose histories in the disability field began in these institutions and, you know, they all had at some point worked in NORCE or SORC or another state run institution — very much identified those same sort of emotions of this being an important part of the work that they’ve done. And I think what was interesting within that was that struggle, of how do we see that maybe there is something better. Maybe this community inclusion thing is a good thing, for both family members, the individual, and our professionals in the field. How do we move on from that, but how do we do it in a way that also respect that this was a place that was of a high importance for these individuals and that did serve a purpose and in some ways there were some good components of that. And so we could feel that struggle with, you know, to move on sometimes felt like, okay, that’s what we have to do because that’s the better part, but there’s a huge history here for my relative that they’ve developed in the institution.

Donald Taylor: What factors in these transitions were most important in changing the minds of family members toward community living?

Jennifer Jones: I think one of the things that we heard from family members was when their relative was truly included in the community, when the there was a dad who talked about, when I realized that they had him going to Walmart in the middle of the day, and he wasn’t just sitting in a bean-bag. And I think, wow, going to Walmart in the middle of the day is the most normal thing in the world. But it wasn’t something that these individuals had experienced and it wasn’t an expectation for their family. They were so surprised by what we all know was the normalization principle — but they were so surprised that their relative could be included in that. And I think when that happened, we also had family members who talked about the way that their relative had grown and developed. And that this individual who had been primarily non-verbal was now working much more at communicating verbally and they were shocked at that growth in development for a 50-year-old or a 60-year-old and those were really exciting and wonderful stories to hear around the kitchen table.

Kami Gallus: I would say also, on the flip side of that, while when they saw their family member being involved in the community, that started to put them at ease. And family members, you could hear, kind of, talking through, okay, this makes sense, this community inclusion thing.

On the flip-side, we hear the struggle if that wasn’t happening, of, okay, I put my family member in a daily living support setting where there’s supposed to be community inclusion. And when that wouldn’t happen — like when they would say they were supposed to be taken to a library, and they never did it, and they never did it, and they never did it, week after week: those were difficult experiences for family members to feel like, well, was this a really good choice for my family member?

Donald Taylor: I know this study is about family perceptions, but as I was reading your article, I kept wondering, what some state DDS [Department of Disability Services] and agency personnel did right, and what some did wrong that resulted in such different outcomes for families. Did you get any sense from your interviews?

Jennifer Jones: What we heard from family members is when they had either agency personnel or DDS personnel who collaborated with them, when they had someone who respected them as a family member and saw them as part of the team, things seemed to go well.

Now family members also talked about that it was difficult. That their role changed. And we had family members who said, you know, this is hard because now, you used to — they were three or four hours away. Now they live here in my community and I feel this great sense of obligation to go by. And I have this need to be vigilant. And I worry more than I did. Because they are down the street. But I think when they had consistency and they had collaboration, we saw that things worked out well. When there were great frustration with staff turnover, it was hard on families.

Kami Gallus: I think the big word in that too, in that theme, is collaboration. So while family members want to feel like a part of the planning process, we also very much heard that they didn’t want to feel like they were having to do all of that process either. You could very much hear them speaking about the learning curve to all of the state services and supports that are available. And not having had to work that system for several years, being, kind of, thrown back into it as a guardian was fairly stressful for them as well. And so, you could, kind of, sense that pull in both directions: we want to be a part of it, we want our voice, we want to be seen as an important person in our relative’s life, but we don’t want to take the whole brunt of that, and we want to feel like our case manager is able to answer some questions and come with some answers as well. And so certainly a delicate balance for case managers and state workers who are engaging in this process is figuring out for each family — and that was different, you know, you could hear that each family maybe wanted that at a different level of: how much do they want to answer these questions and what are some of the questions and choices and decisions that they want the case manager to come with some advice with as well. So …

Jennifer Jones: I think also understanding, you know, there was a struggle between what was in the individual’s — what was in that relative’s best interest. Was it in their best interest if they’d lived at NORCE with the same roommate for 30 years and one roommate’s family lives on one corner of the state and the other roommate’s family lives in the other corner of the state, do you keep the roommates together or, you know, do you split them so that they’re closer to their sibling-guardian or their parent-guardian? And those are really tough choices for families and it was hard to accommodate all of the complex factors that were involved.

Donald Taylor: So, is there an answer to the question behind that question: what made some support personnel do a better job than others in providing the appropriate level of support and consultation to families?

Kami Gallus: You know, while we didn’t specifically ask that question to families, I think part of it comes out in our last theme that we found, which was the whole idea of remembering: we are family. That this process is emotional for them. And so you could very much hear for family members whose case manager recognized the emotional struggle for families, that there was worry and there was concern. When case managers worked to get the relative placed with their roommate that they had had for 35 years at NORCE or SORC, and that was accomplishable for everyone: those are the sort of things that worked well. And when the case manager gave the family member the opportunity to be a family member, and that they weren’t the professionals in this game. A lot of our family said, you know, we’re not professionals: give us give us time in this process.

As professionals, as researchers in this field, we recognize, you know, okay, community inclusion is the best for these individuals. But our family members haven’t been on board and reading those manuscripts and the research that has come out, to be aware of where the field has been heading. And so for them to receive that phone call some winter evening in 2013 saying, we’re working to move your relative who’s been in NORCE or SORC for the last 35 years closer to your home town; here’s all the decisions you need to make — that’s a huge, huge phone call and a huge new decision that is being placed on some family members that have played a different role for their relative for many years. And so I think when family members felt like case managers gave them time to, kind of, settle into that, that also played a role in, you know, finally, kind of, feeling like this was something that was best for their family member.

Donald Taylor: There is a significant national movement in opposition to community living and the HCBS waiver. What can you say to opponents as a result of your research?

Jennifer Jones: I think primarily when we don’t know our history, we are — it’s dangerous that we’re going to repeat it. And I think that’s a part of what we wanted here, was to have family members share their voices, because I think we have a new set of family members who are now advocating for this anti-HCBS. And if I could get them together, if I could get that mom who has an 18-year-old with autism who she’s so concerned about, if I could put her at the kitchen table with a mom who is 70 and didn’t have the choice 65 years ago, and was told her only option was institutionalization and — the way — if she could listen to the stories of that 70-year-old mom and the 65 years that their child spent in institutionalization; I think, oh, if I could just help you hear the story, maybe you would understand what community could mean for your child if you also had a better understanding of what institutionalization did mean.

Kami Gallus: Along those lines, Dr. Jones, it’s making me think of one of our quotes from one of our family members that said, you know, she started off: “I don’t want to have regrets, but if I had only known what …” — and I believe this was a sister, if I’m remembering correctly the relationship — “.. but if I’d only known my sister’s potential: Man! You know. Gosh!” You could just — she didn’t go on because, you know, “I don’t want to have regrets” but you knew underlying what she didn’t say was, gosh, I wish we had had the opportunity to have another experience for my sister that would have allowed for community inclusion much, much sooner in her life than when we’re in her 50s or her 60s.

Jennifer Jones: And we did hear — while in this particular manuscript we didn’t find differences between parents and siblings in the themes — we’re continuing — we have a wealth of data and we have a couple of other manuscripts in progress that we’re working on, and one of the things that we are seeing is the sibling experience, particularly in asking about, what was it like when your brother or sister moved to NORCE or SORC is very different than what we heard from parents of what it was like. And I think — we haven’t finished that analysis — but I think what we’ll hear from siblings is going to look different and they feel like they missed out: they feel like they missed out on having a brother or sister. And I wish, as a parent, I only know my parent perspective: I don’t know this perspective of my child who has an intellectual or developmental disability, and I don’t know the perspective of his siblings. But if we could learn to try and listen to that other perspective, I think we might have less fear about what inclusion looks like — whether that is employment, whether it’s community living, whether it’s a general education classroom.

Kami Gallus: But then along those same lines of also saying at the end of this, inclusion, when done well, is hard. And it’s difficult. And I think that’s one of the, kind of, final things that we walked away with was: if we’re going to say that inclusion is good, all that we learned about what we need to do for these family members, and the transferable models of support that we need to develop. So it’s easy to say community inclusion is best for your child, but are we offering — are we set up a model that supportive of that for these families. And I think that’s very much what our aging population and sample of parents and siblings are, kind of, saying to us is, you know, gosh, if I had known that this would work that’d be great, but we didn’t have that model of support. And I think we still have to ask yourself that question right now: do we have that model set up for families today, still?

Donald Taylor: So, I’m going to ask a self-indulgent theoretical question: I’m interested in the general systems theories of Ludwig von Bertalanffy. I see that you briefly reference his work in your article and I had no idea that his work had any application in the study of family dynamics. How has his thinking effected the understanding of the role of the family in your study?

Kami Gallus: Well I think that’s where my field, and my background as a marriage and family therapist really came into play with this, and my thinking of the interconnection of parts of a system. And I think, you know, that’s what’s been very interesting for me in jumping into the disability field — is to see the real focus on individualized plans. And I remember as Dr. Jones and I would start talking about quality of life of these individuals, you know, as a systems thinker who sees an individual so impacted by the system they’re a part of — and for me that most important system that we’re a part of is a family — is how can we think that our individualized plans are going to be successful if we don’t consider that individual within their family. And that’s been a really interesting, kind of, jump for me to think about — and also, I think, been kind of fun for Dr. Jones and I to start to think about how we could help move the disability field along in thinking about the individual within the context of the family. I mean, there is the saying, “If mom ain’t happy, ain’t nobody happy”, right? And so, how does that same thing fit for individuals that are in the process of deinstitutionalization. If our family members aren’t on board with this, what kind of stress does that put on the individual who’s making that transition. And I think the history of the disability field — from a systems perspective thinker — has very much taken that individual outside of their family context and — very figuratively, and very literally, with the deinstitutionalization movement — how do we put these families back in communities, but also back into their family systems as well, is, kind of, how a lot of our thinking within this study started to be placed back in. How have we forgotten that these individuals that are transitioning out of our state institutions — they are sisters. They are daughters. They are sons. They are brothers. And they fit within a systems context and how do we put them back into that, and respect that, and the role that that system can play in their overall quality of life and health.

Donald Taylor: In the study, you bring up a couple of instances where families reported to you that they encountered a lot of difficulty in scaling the learning curve of community-based living support systems. What should families and people with disabilities who might be starting out in transitioning to community living know about the process?

Jennifer Jones: I don’t know that there’s a simple answer to that. I think there are many layers to it. I think, first of all, what we heard from families, in part, was they didn’t know the language. So even though there were some informational meeting — and I think many of the families attended those — you don’t know what you don’t know. And so they didn’t know what they were supposed to be listening for. And it was clear from some of the interviews that we did, or their responses on our quantitative survey, they were confused between what is a provider agency, and what is DDS, and who’s responsible for what. And I think that we take that for granted when you work in the field you know that terminology. And these families didn’t know that basic terminology. And so backing way up for them and giving them the tutorial, of this is the organizational structure, this is who DDS is and this is what they’re responsible for, and this is who a third party provider agency is. And when we we use all of these acronyms. We talk about PCs and CMs and IPs that — families were lost. And so how can we simplify that information when they’re already flooded emotionally. I think that would be a good starting point.

Kami Gallus: Also comes to mind for me, is that in many of our interviews the process of deinstitutionalization became equivalent to politics. And, you know, family members would say we were writing letters and we felt like our governor was doing all — and I think along those lines, like the difference between: this is a political decision versus this is a best practice decision. So along the same line that Dr. Jones is saying, our family members need to be made aware and educated and reeducated about where the field is going. How do you change the story of deinstitutionalization from federal dollars, and state dollars, and a political decision about budgets to what is best practices? And I think unfortunately for our family members, they see one side of that, and that’s the story that gets told for them and they’re not aware of the best practices processes.

Donald Taylor: Do you have any sense of how that narrative might be changed, or how more information on best practices might reach family members and citizens at large?

Jennifer Jones: We have — I think one of the things Kami and I have talked about over the last couple of years is the unnecessary adversarial relationships we see between families and professionals. We see this — I don’t know what else to call it other than unnecessary adversarial relationship — where they’re almost feel like they’re pitted against each other or one knows best and not the other, rather than this collaboration. And I think we see that across multiple systems — whether it’s the education system, whether it’s the state DD services and HCBS, whether we’re talking about voc. rehab., or whether we’re talking about sheltered workshops — I think we have some of those same things going on between who knows best, rather than, how do we sit down truly as a team, around this table. And when we heard that families have sat around the table together, we saw a collaboration and a shared goal that benefitted the individual and the family and, I think, the professional, whether it was a case manager or a program coordinator walked away feeling better about their job. So how do we how do we build collaboration between professionals and families?

Donald Taylor: Professors Jennifer Jones and Kami Gallus, thank you for taking the time today to help change that narrative and to help inform people who might be facing some of these decisions around deinstitutionalization.

Kami Gallus: Thank you. It’s been a pleasure.

Jennifer Jones: Thank you.

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Today’s episode featured two researchers from our scholarly journal, Research and Practice for Persons with Severe Disabilities. To learn more about RPSD, you can visit the publisher website, rps.sagepub.com. You or your organization can subscribe there. Also, RPSD, including web access to the entire 40-years of previous issues, is available to TASH Professional and Organizational members, as well as select reduced memberships. To become a member and receive RPSD, visit tash.org/join.

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